Living With the Diagnosis of Autism Spectrum Disorder

It’s difficult to hear for the first time that your child has an autism spectrum disorder and realize that your child’s life and yours may be very different than you expected. Living with autism does present challenges. How do you answer the questions in your mind? How do you get over that initial shock? Why us? How do you know what to do next? How do you tell your friends and family? We at Autism Delaware can help you with those questions as you begin your journey with autism.

What we know is that you may go through stages of grieving – shock, sadness/grief, anger, denial, loneliness, acceptance. As time goes on, you may revisit certain stages of grieving as your child reaches different developmental phases. When you first learn of the diagnosis, give yourself time to deal with it. Every person deals with it in their own way. There is no right or wrong way to cope with stressful times. What is important is that you also begin the journey of getting help for your child and your family. Starting your child in intervention will help you feel better. As you see your child progress, you will be inspired and hope will grow. When you are ready to reach out for support, we are here for you. There are many organizations and persons who understand and are ready to help. See our resources section for more information about where to turn, or call one of our offices to speak to a parent mentor.

Tips For Caregivers

Learn to be a good advocate. Talk to PIC, sign up for Wrightslaw newsletters, attend a conference or workshop.

Connect to the autism community to find the support from people who truly understand what you are going through.

Take care of your marriage/relationship. Schedule date nights or make other special plans so you can continue to connect to your partner and support each other.

Remember to connect with your “pre-autism” network. You need their support and need to socialize with typical peers and children as well.

Look for and appreciate the small victories your child will make. You are likely to feel like the most grateful parent if you learn to do this. Celebrate each new skill or accomplishment your child makes.

Thoughts on Living with an Individual with ASD…

Autism-Related Problems of Connection

Lisa L. Nelson, M.A., CCC/SLP

The best way to understand a culture is to observe, interview and interact with the natives of the culture. First and foremost, we all belong to the tribe of human beings. Within our tribe, there are many sub-cultures, and people who have autistic spectrum disorders have some cultural differences that members of the non-autistic culture should be aware of.

Donna Williams, author of Autism and Sensing – The Unlost Instinct and many other books about having autism, explains problems of connection in terms of general information processing problems. She feels these problems are also at the root of the problems she refers to as problems of tolerance and problems of control.

Information processing is about taking in information from the senses and organizing it for meaning and personal significance. It is also about being able to monitor one’s own actions and feelings, and monitoring what one is expressing for intention and meaning of what’s expressed. It is also about accessing prior experience and knowledge to relate or respond to new information. One has to retain a grip on thoughts, feelings and experiences to be able to formulate meaningful responses to current situations. For people with autism, maintaining a grip on the present while accessing stored information and monitoring expression can be an overwhelming activity. Most of us do these things without any conscious awareness, let alone any contemplative consideration, for what it is we are doing.

In order to help people with autism-related problems of connection, you can:

Slow down. If the speed of incoming information is slowed, the brain has a better chance to cope with it effectively.

Leave things out to speed things up. Keep it simple. Leave out the unnecessary.

Use an indirectly-confrontational approach. Keep communication formal, detached and impersonal. Avoid emotive language and body language. Direct explanations and demonstrations to the objects or items related to that demonstration.

Give REAL breaks. No talking. No sensory bombardment.

Keep things concrete, observable, tangible and more quickly/easily able to be interpreted.

Be clear. Be concise and to the point. Use predictable ways of presenting information. Clearly and concretely indicate starts and finishes.

Give extra time and extra information to prepare for transitions.

Appreciate that people with autism often suffer from chronic stress, and be aware of how this elevated stress level can influence behavior.

Be aware of an individual’s sensory preferences and sensory sensitivities, and understand how the environment influences information processing.

Cut down on irrelevant, excessive and distracting sensory information. Be aware that nutrition, sleep, activity, exercise, and environment impact functioning.